Parenting a Child with Asperger's Syndrome: A Balancing Act

Abstract

This study provides an interpretive description of parents' experiences of raising a child with Asperger's syndrome (AS). Thirteen parents (eight mothers; five fathers) from eight families participated. Data were comprised of repeated semi-structured interviews with parents. The core concept of a "balancing act" was identified, and included two key themes: losing our footing and regaining our balance. Parents lost their footing when they experienced escalating challenges and lack of parenting success. They persevered over many years to find an answer to their children's problems. The diagnosis of AS was a turning point that initiated the process of "regaining our balance," enabling parents to better understand both their children and the condition. In this part of the process parents gradually experienced parenting success and rebuilt their confidence. The results of this study suggest that parenting a child with AS is a complex and evolving process in which parents struggle to find the right balance for themselves, their child with AS, and their family as a whole. Parenting encompassed joys and sorrows and an important part of finding balance included the ability to acknowledge both the positive qualities of their children and the challenges of managing the condition. Lack of professional recognition of AS, as well as blame and stigma, negatively affected these participants' ability to parent and points to the critical need for further education of teaching and health professionals.

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Web End = Parenting a Child with Aspergers Syndrome: A Balancing Act

Carole A. Robinson Kaley York Alexandra Rothenberg

Laura J. L. Bissell

Published online: 19 August 2014 Springer Science+Business Media New York 2014

Abstract This study provides an interpretive description of parents experiences of raising a child with Aspergers syndrome (AS). Thirteen parents (eight mothers; ve fathers) from eight families participated. Data were comprised of repeated semi-structured interviews with parents. The core concept of a balancing act was identied, and included two key themes: losing our footing and regaining our balance. Parents lost their footing when they experienced escalating challenges and lack of parenting success. They persevered over many years to nd an answer to their childrens problems. The diagnosis of AS was a turning point that initiated the process of regaining our balance, enabling parents to better understand both their children and the condition. In this part of the process parents gradually experienced parenting success and rebuilt their condence. The results of this study suggest that parenting a child with AS is a complex and evolving process in which parents struggle to nd the right balance for themselves, their child with AS, and their family as a whole. Parenting encompassed joys and sorrows and an important part of nding balance included the ability to acknowledge both the positive qualities of their children and the challenges of managing the condition. Lack of professional recognition of AS, as well as blame and stigma, negatively affected

these participants ability to parent and points to the critical need for further education of teaching and health professionals.

Keywords Aspergers syndrome Mothers and fathers

experience Parenting Qualitative Interpretive

description

Introduction

Aspergers syndrome (AS), a high functioning form of autism, is growing in prevalence, having risen tenfold over the past decade (Van Bergeijk and Shtayermman 2005). While denitive data regarding the incidence of AS are scarce (American Psychiatric Association [APA] 1994), within Canada it is estimated that one in 165 children has an autism spectrum disorder (ASD) (Fombonne et al. 2006). Prevalence estimates of ASD in the United States and Britain are even higher (Centers for Disease Control and Prevention 2007), with a signicantly higher incidence among males when compared to females (Centers for Disease Control and Prevention 2012). Likely explanations for the rise in prevalence include greater awareness of ASD symptoms, and the inclusion of broader criteria for the diagnosis of ASDs (Muhle et al. 2004), although a conclusive explanation for such a large increase in the number of diagnoses remains unknown.

Despite the rising prevalence rate, researchers know little about parents experiences of raising a child with AS. Previous research focused largely on the causes and sequelae of social decits associated with AS (Blacher et al. 2003). Additionally, to date, studies of families experiences of autism have predominantly focused on the general category of ASDs (Huws et al. 2001; Schall 2000)

C. A. Robinson (&) L. J. L. Bissell

School of Nursing, University of British Columbia, Okanagan Campus, Kelowna, BC V1V 1V7, Canadae-mail: [email protected]

K. YorkInterior Health Authority, Salmon Arm, BC, Canada

A. RothenbergSchool of Social Work, University of British Columbia, Okanagan Campus, Kelowna, BC, Canada

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or ASDs with concurrent co-morbid conditions such as learning disabilities (Benderix et al. 2006; Little and Clark 2006), providing little insight into parents unique experiences of raising a child with AS. However, a small but growing body of literature has emerged regarding parents experiences of raising a child with AS (Harper et al. 2013; Gill and Liamputtong 2013; Firth and Dryer 2013; Lasser and Corley 2008; Chell 2006; Portway and Johnson 2003).

Children with AS are diagnosed on average at 11 years of age. This is much later than children with other forms of autism who are typically diagnosed at 5.5 years of age (Howlin and Asgharian 1999). Early identication and intervention are critical to promoting successful outcomes for children with ASDs; a late diagnosis of AS increases the vulnerability of these children to poorer health outcomes (e.g., development of co-morbid conditions) and adversely impacts families caring for them (Butter et al. 2003). Delayed diagnosis of AS means parents have difculty acquiring the essential knowledge, skills, and services to effectively manage the condition (Chell 2006; Gray 2002; Howlin and Asgharian 1999; Lasser and Corley 2008; Portway and Johnson 2003).

Chells (2006) qualitative study of young people with AS and their parents identied the importance of the diagnosis. It conrmed parents observations of their childs difference, and validated their experiences. Further, the diagnosis was like a ticket (p. 1353), enabling parents to gain access to helpful services and supports. Similarly, Lasser and Corley (2008) found the diagnosis validated [parents] concerns, provided them with a word for what they had observed, and directed them to a constellation of resources specically able to address their needs (p. 342). While parents in both studies identied the positive aspects of receiving their childs diagnosis, the parents in Chells study also described its painful impact and their subsequent resistance to the diagnosis because of its negative implications for their child. While these studies highlight parental experiences, they are largely exploratory in nature and tend to privilege mothers perspectives of raising male children with AS. As a result, there is little insight into parenting from the perspectives of both mothers and fathers of male and female children with AS.

Recent studies have shown that parents of children with AS experience considerable stress (Epstein et al. 2008; Mori et al. 2009). This stress has been linked to their childs problematic behaviours (Mori et al. 2009) and associated features of AS, including sensory sensitivities (e.g., heightened perception of touch, smell, taste) and executive functioning decits (e.g., problems with goal-directed behaviour, planning, working memory, multi-tasking, and exibility) (Epstein et al. 2008). Mothers and fathers of children with AS were found to experience comparable levels of stress, although a signicant

relationship between parenting stress and child characteristics was found only for mothers (Epstein et al. 2008). The reason for this gender difference remains unclear; however, researchers theorize that fathers of children with AS may experience parenting stress differently than mothers (Epstein et al. 2008; Jones et al. 2013). Stigma has also been described as a signicant source of stress for parents of children with AS (Calzada et al. 2012; Chell 2006; Gray 2002). Parents of children with AS experienced feelings of rejection or shame, were criticized for their child-raising abilities, and mothers experienced avoidance, overtly hostile staring, and rude comments when in public with their child (Gray 2002).

There is evidence to suggest that parents of children with AS are at high risk of experiencing mental health challenges such as depression and anxiety requiring psychotherapy and medication (Little 2002; Stoddart 2005). According to Dillenburger et al. (2010), parents of children with an ASD, including AS, are nearly three times more vulnerable than the general population to psychological ill health. Further research is needed to explore fathers as well as mothers experiences raising a child with AS, to better understand the uniquely stressful challenges they experience. These parents represent a particularly vulnerable population whose experience is inuenced by unique aspects of AS, including delayed diagnosis. More children are being diagnosed with AS than ever before; as a result, the need to access support services tailored to these families particular needs will increase. Above all, the gaps in the literature support the importance of gaining a better understanding of parenting from the perspectives of both mothers and fathers of both male and female children with AS.

This qualitative study investigated mothers and fathers experiences of raising a child with AS (York 2007). The aim of the study was to enhance understanding of the parenting experience unique to AS, and to inform the provision of services and supports to this population. It is important to note that following the recent release of the fth Diagnostic and Statistical Manual of Mental Disorders, AS is no longer classied as distinct from autism, but rather it is assimilated into the broad diagnostic category of ASD (APA 2013). The reported study was conducted prior to the change in classication.

Method

Participants

Convenience sampling was used to recruit parents who met the following criteria: mothers and fathers of male and female children between the ages of 11 and 19 with a

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Table 1 Data collection

Family Interviews Participants involved

Family 1 Interview 1 Mother

Interview 2 Mother and father

Family 2 Interview 1 Mother

Interview 2 Mother

Family 3 Interview 1 Mother

Interview 2 Mother

Family 4 Interview 1 Mother and father

Interview 2 Mother and father

Interview 3 Mother and father

Family 5 Interview 1 Mother

Interview 2 Mother and father Family 6 Interview 1 Mother and father

Interview 2 Mother

Family 7 Interview 1 Mother and father

Interview 2 Mother and father

Family 8 Interview 1 Mother

Interview 2 Mother

Total number of interviews 17

Number of individual interviews 9

Number of conjoint interviews 8

conrmed diagnosis of AS; the childs diagnosis was known for at least 2 years but no more than 6 years; the parents were uent in English; and, the family resided within the study area (three mid-sized communities in southern British Columbia, Canada). In the effort to understand the parenting experience of raising a child with AS, only parents of children with a primary diagnosis of AS and no other concurrent medical and or psychiatric conditions (e.g., epilepsy, diabetes, non-verbal learning disorder, attention decit hyperactivity disorder, depression, anxiety, or psychosis) were recruited. Concurrent diagnoses would potentially impact parents experiences in ways that may vary from the parenting experience specic to AS, resulting in unique parental perspectives and different services and supports accessed, and thus these parents were excluded. The age parameters were set based on 11 years being the average age of diagnosis (Howlin and Asgharian 1999), and the recognition that the adolescent period can be a particularly challenging time for parents raising a child with AS (Tantum 1991). Further, signicant changes in service provision occur once a child is of legal age; therefore, parents of adult children were excluded. Parents who had known their childs diagnosis for at least 2 years but no more than 6 years were recruited because this enabled time to adjust to the diagnosis, develop knowledge and skills in relation to the diagnosis, and gain familiarity with and access to the services available. Further, as only a few years had passed since receiving their childs diagnosis, parents were able to easily call forth and speak to their experiences of parenting a child with AS.

Parents were recruited within the study area largely through newspaper advertisements and articles as well as through third party recruitment by multiple ASD service agencies and one ASD family support group. Due to the ethical constraints of third party recruitment, the researchers do not know how many eligible families were approached by third party recruiters and then declined to participate/consent to be contacted. Sixteen families contacted/consented to be contacted by the research team; however, eight families were excluded from participation at the recruitment stage as they did not meet the inclusion criteria. Once they agreed to participate, none of the recruited families withdrew.

Eight mothers and ve fathers from eight families participated. Each family had a child who was receiving or had received autism funding, which, according to provincial regulations, requires a conrmed diagnosis of AS by a qualied specialist. All were dual parent families and of Caucasian descent. The average age of parents was 46. 6 years (average age of mothers (years): 46.25 7.31; average age of fathers (years): 47.67 7.37). Most mothers reported they had received a college education or higher (n = 6, 75.0 %); three fathers reported receiving a

college education or higher (37.5 %). Fathers education was not reported for two fathers. Half of the participating families reported an annual income of more than $50,000; one family reported an annual income of $25,000$50,000 while the remaining three families did not report annual income. Most mothers (ve of eight) were employed at the time of the interview. Six of the eight children with AS were male; the female children with AS were slightly older than the male children with AS (16.5 years 3.53 vs.14.17 years 2.14). Average age at diagnosis was10.75 years (SD = 2.87 years) and families had known of the diagnosis an average of 3.87 years (SD = 1.46 years). In six of the eight families, the child with AS had one sibling and was the rst born; in the remaining two families, the child with AS had two siblings and was the second born. All but one child with AS was living at home with their parents. Parental participation in interviews is described in Table 1.

Procedure

Written informed consent was secured at the outset of the study and verbal consent was obtained on an ongoing basis. The study was approved by the university research ethics board. Parents were given the choice of conjoint or separate interviews, which ranged from 1 to 3 h in length. All but one family participated in two interviews; the 8th

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family participated in three. The time interval between multiple interviews ranged from 1 week to 2 months. Multiple interviews enabled the researchers to ensure all relevant questions were posed and to conrm and clarify understanding as well as gain parental verication of the interpretation of their experiences. An interview guide directed each interview; however, not all questions in the guide were asked of all parents. Questions included: (1) Im interested in what its like to be the parent(s) of a child with AS, can you tell me what it is like for you? (2) Tell me about receiving your childs diagnosis of AS. Since the diagnosis what have been the major challenges and positive aspects that you have experienced? (3) What has been the impact of having a child with AS on you, your relationship with your partner, and your family? and, (4) What has your experience been like accessing services for your child with AS? Interviews were audio-recorded, transcribed verbatim, and accuracy checked. Data were comprised of 17 semi-structured interviews. Recruitment ended when concurrent analysis showed consistent and well-supported themes that clearly addressed the research topic. Field notes were systematically used for each interview, recording pre-interview goals in addition to interview impressions, key words, nonverbal behaviour, researcher impressions, analysis, and reexivity, and follow-up questions. They also provided rich contextual information that supported data analysis.

Data Analysis

Interpretive description was employed in this study (Thorne 2008). It is a qualitative research method commonly applied in the social sciences that accounts for the constructed and contextual nature of human experience while allowing for shared realities (Thorne et al. 1997). Interpretive description moves beyond simple description and allows for meanings and explanations to be generated from the narrative, thus enhancing clinical understanding and utility (Thorne 2008). This systematic approach emphasizes practical inquiry, meaning the knowledge generated from this method can be applied to and directly informs practice.

Data analysis occurred concurrently with data collection. Interview data were independently analyzed by two researchers (KY and CR) using constant comparison (Thorne 2008) derived from grounded theory methodology (Glaser and Strauss 1967). This method involves constant comparison of pieces of data within and across interviews noting similarities and differences (Thorne 2008). The researchers met after each transcript was systematically analysed, and codes and patterns were determined by consensus. Critically-oriented questions were used to further probe the data (Strauss and Corbin 1998). This

questioning process enabled digging beneath the surface for meaning (Strauss and Corbin 1998). The codes and patterns were organized into a framework of themes and related sub-themes. Once the coding framework was stable, all transcripts were coded using NVivo 8 data management software. Data analysis continued until a coherent interpretive description of parents experiences was rendered.

Results

The purpose of this study was to describe and explain the nature of parenting a child with AS from the perspectives of both mothers and fathers. Analysis resulted in the identication of a core construct. For these participants, parenting a child with AS was a dynamic and complex balancing act. The balancing act was comprised of two themes: losing our footing and regaining our balance.

Losing Our Footing

Many parents rst noticed their childrens differences in the infant and preschool years. During these early years, parents remained in balance because they believed they had a unique but normal child and were comfortable with handling the identied differences. The most common difference was the childs difculty tting in with others. Many parents described their childrens quiet nature and preference to play alone.

Mother: He wasnt rambunctious. He was always very quiet and very much to himself. He could wander around outside in the yard with one little stick [and] playfor hours on end and not be distracted.

He didntlike to play with toys that I gured were common with boys. (Family 1)

Two families described how their children were expelled from daycare because of difculties tting in with others.

Mother: When he was three we were asked to not send him back to daycare because he was too quiet and always withdrew, and didnt want to participate with the other kids. Like when the kids were all playing playdoh, he wanted to read a book, and then once those kids moved onto another activity hed be happy to play playdoh, but he never wanted to do anything in a group. (Family 3)

Father: We knew that he was probably a little more aggressive than some of the other kids out there, thats why he got expelled from daycare. There was another kid who was playing with his toy, and [Child with AS] wanted the toyand asked very nicely Can I see the toy? and the little boy wouldnt let

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him share it. So he picked the boy up and dropped him on his head and took the toy and walked away. (Family 6)

Parents noticed their children engaged in unusual, often repetitive behaviours such as nger icking, drawing pictures, and lining up toys. They also observed their childrens intellectual differences from same age peers, identifying advanced memory skills, exceptional ability to concentrate on tasks for long periods of time, strong pursuit of interests that exceeded their age level, and extensive vocabulary.

Mother: He was watching a documentary about animals, a two hour documentary. About 6 months later he comes up with some obscure information about some obscure snake that I had never heard of and I said How do you know that? and he said It was on that show I watched. (Family 1)

Initially, parents dismissed their childrens differences because they could be reasonably explained and managed. However, as the differences grew, they became problematic and parents were seriously challenged in their ability to parent, experiencing lack of parenting success (i.e., they were unable to help their children be normal).

Many parents became frustrated with their childrens insistence on rituals and routines; demands for consistency and sameness. They could not understand the reason for their childrens inexibility, and they struggled to manage the meltdowns that ensued if there was the slightest change. Some parents became uncertain about their ability to parent, and when they questioned helping professionals about what they should do, answers were not forthcoming.

Mother: [Child with AS] had very strict schedules like when he ate cereal I had to use a blue bowl with a purple spoon and I had to pass it to him with my right hand. I could not pass it to him with my left hand without him having a meltdown. And the doctors couldnt explain to me why. Im like But why? and theyre like Well, hes just decided that thats the way it needs to be and hes just being stubborn so we encourage you to pass it to him with your left hand and get him to understand that it is still okay to eat the cereal. He wouldnt eat breakfast for 3 weeks, and then Id be calling my doctor again going Is this okay? because its affecting his health now, and theyre like Oh, well we cant really tell you [laughs], and it was frustrating. (Family 3)

In addition, sensory sensitivities were noted by many parents who described their childrens acute perception of, and discomfort within, the sensory environment. Parents struggled to understand why their children became upset

with sensory stimuli such as touch, taste, light, and noise. One mother explained it this way:

So we started to see all this sensory stuff happening and then at the same time it was like his clothes werent right and he couldnt eat that kind of food because it was too squishy, and he couldnt eat that food because it was too crunchy, and were like What is going on? As parents we had no idea, right. (Family 3)

Many parents tried to gure things out on their own but were unsuccessful in changing their childrens behaviours. Parents became increasingly puzzled when the sensory sensitivities increased and became problematic at school. One mother described how her son adamantly refused to attend school because of the unpredictable sensory environment. Everything from the rustling of paper in the classroom to the sound of chalk against the chalkboard was upsetting. Another mother described how her son had to touch the carpet in the classroom before sitting down, gauging whether he could tolerate its texture. A few parents described how their children were an easy target for peers who could readily perceive and provoke their triggers.

Parents began to eagerly search for the answers they needed to understand, explain, and manage their childrens behaviours. Not knowing the reason for their childrens problems, parents looked to themselves for answers, which often resulted in feelings of self-blame, guilt, and helplessness.

Father: Your rst instinct is to blame yourself for something that youre doing thats making the situation the way it was. I dont know if I ever looked at it as trying to x [Child with AS], because the last thing you want to think when youre in a situation like that is theres something wrong with your child. Its almost like youve lost your child, and probably no different than if they had died. The strife and the feelings of guilt and the feelings of helplessness that you have, like what kind of a parent am I? I cant do anything to help my child. (Family 7)

A few parents blamed each other, questioning each others discipline style and communication skills. When the children misbehaved and had meltdowns in public, an audience of others (strangers, extended family, professionals) also blamed parents for allowing the misbehaviours, and not properly disciplining their children. Thus, the typical answer to the persistent question of Why is this happening? was inadequate parenting. Many parents explained how extended family judged and blamed them for not implementing sufcient discipline, which exacerbated parents feelings of self-blame and guilt. As a result,

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parents chose to limit their encounters with these family members, and a few mentioned that a rift occurred in their relationships with extended family.

When parents sought answers from school and health professionals, voicing the concerns they had about their children, many were not taken seriously. Instead, they were blamed for imagining or exaggerating problems and not parenting well enough. A few parents were encouraged to read parenting books or enrol in parent training to learn how to effectively discipline their children. However, parents found these were unhelpful and ineffective recommendations. For the most part, these parents believed they were strict enough. When the professional spotlight shifted away from the child and towards parenting, some parents became defensive.

Mother: Thats the very rst reaction is that this is a parenting skills issue or an environment issue at home, so its yours to deal with, or you need to get this child under control. We said, Look, we can understand that if we were low income or uneducated or we werent good parents or there was a divorce in process, or some stressors at home, but there isnt any stressors. (Family 6)

Only one family experienced a relatively direct path towards a diagnosis of AS for their child. Instead, most parents did not receive the help they desired or needed. When problems were recognized at school, parents were not initially informed. School professionals who, like the parents, had trouble managing the childrens difcult behaviours resorted to punitive measures, which proved unsuccessful. As a result, the problems at school continued to worsen and parents remained uninformed and unable to help. During this time when parents struggled with unhelpful answers from school professionals, they actively pursued assistance from health care professionals. However, parents received inadequate explanations, inaccurate and incomplete diagnoses, and unhelpful treatment recommendations. Many physicians did not have enough information to diagnose AS, and often did not have the expertise to recognize its subtle cues. Five families received inaccurate diagnoses (i.e., Anxiety Disorder, Pervasive Developmental Disorder-Not Otherwise Specied [PDDNOS], Sensory Disintegration Disorder, Attention Decit Disorder, Manic-Depressive Disorder) for their children, and ineffective medications were prescribed. As one father, who rejected an initial diagnosis of PDD-NOS as inadequate, explained:

Early on it was the anxiety disorderand I was going yeah, that is pretty much bang on cause she did have anxiety problems. And then when they came up with the PDD-QRMNOS [referring to PDD-NOS

diagnosis] Im like these guys dont have a clue. So they wrote out a bunch of initials and said heres what your kid has. Im going they dont have a clue, why are we even listening to them? I wasfrustrated with the system then. If you dont have a clue just say we dont have a cluedont be making up stuff not otherwise specied. (Family 5)

Parents remained at a loss about what to do to help their children.

Mother: I think as a culture we kind of expect certain people and professions to have the answers that we need when something doesnt work. And I think doctors can get the short end of the stick. Cause we think if somethings not working or if somethings broken, that they know what it is and theyre gonna ask me the right questions to get the right answers, and, when the doctors dont have those answers, its incredibly frustrating. (Family 3)

Unsure of how to help their children, parents met roadblock after roadblock and oundered. For two mothers and one father, the stress of parenting through the unknown culminated in depression. Losing their footing proved devastating for parents and the ongoing lack of success in nding reasonable explanations for their childrens problems and effective ways of parenting led to feelings of defeat. However, despite the difculty, parents persevered with a desperate hope and devoted determination that they would eventually nd the answers they needed. Giving up was not an option:

Mother: What choice do you have, you cant give up, right. Consider the options, its like, what, leave? [laughs]. Rather than give up you just have to keep trying if you want a better quality of lifeyou just have to keep trying, its all you can do. (Family 5)

Regaining Our Balance

All eight families reached the diagnosis of AS through dogged perseverance and it proved to be a pivotal point in their lives. The AS diagnosis helped parents by: (1) enabling understanding of their child, which supported acceptance;(2) afrming parents experiences as real, which helped to counteract and diminish blame; and (3) opening the door to services and supports, which helped their children and themselves manage the AS. Many parents anticipated the diagnosis of AS, because of familiarity with the condition gained through their readings, academic work, and discussions with others, and had a hunch that it was the reason for their childrens differences. Thus, they expected and looked forward to the conrmation of this diagnosis.

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Parents characterized learning of the diagnosis as a light at the end of the tunnel. It pointed them in the appropriate direction to best help their children. Many parents emphasized that once a diagnosis is made, it is critical to get educated about the AS. As one mother succinctly stated: I do what I have to do, I read, try to understand, and the more I understand the better it gets. The diagnosis was also the key that unlocked the door to a wide range of services and supports previously unavailable to them and several saw it as good news. This contrasts with the assumption of some professionals that the diagnosis would make parents sad and tearful.

Mother: When we went to get the results she said to me I have some bad news for you, he has Aspergers syndrome, and I said Its not bad news because he has it, whether you tell us or not, but now we know what were dealing with. (Family 2)

This experience of mismatched expectations further solid-ied some parents belief that health care professionals did not understand or appreciate how hard they worked to get the diagnosis, and how difcult life had been without a way of making sense of their childrens behaviours.

The process of regaining our balance occurred as parents acknowledged, gained understanding of, and moved towards accepting the AS, and the full extent of its inuence in the family. With the diagnosis and enhanced knowledge of AS, parents were able to better understand their children, which eased some of the challenges of parenting. The diagnosis was freeing because it enabled parents to distinguish behaviours that could be changed from those that could not. Parents developed varying degrees of tolerance for their childrens problematic behaviours rather than feeling compelled to change them.

Father: All of a sudden it seemed like you could tell what was really true in her and what wasnt, like sometimes you could tell that she was doing something to just manipulate me, and then I wouldnt tolerate that, but you could tell when you were being manipulated and when it was really her condition that was showing. (Family 7)

Parents also gained greater acceptance of their own ability to parent and let go of blame in some measure.

Mother: The diagnosis helps because you stop blaming other people, you accept that this is the way he was born, and that is okay. And its nobodys fault anymore. And no parent is perfect, and weve done the very best that we can, and its okay. Thats huge. (Family 6)

The diagnosis also brought challenges. Parents described co-occurring negative responses, including: regret that their child was not diagnosed earlier, anxiety and sadness about

the future for their child, and anger at the unfairness of the parenting burden associated with raising a child with a difference. Thus, parents responses to receiving their childs diagnosis encompassed relief, celebration, as well as a complex array of challenging emotions.

As parents became experts on their child and the AS, they developed and strengthened strategies to help create balance for their child, themselves, and their family as a whole. One strategy that supported a balanced perspective was cultivating appreciation for the childrens unique strengths, talents, and abilities.

Mother: Appreciate your child because theyre wonderful. Some people would call [AS] a disability, other people call it a gift. They say some of the smartest people in society for hundreds of years likely had Aspergers. (Family 5)

Mother: Id say celebrate it. We do, tohelp combatstigma. Its a part of who they are. Dont be shameful about it becausethe only way you get rid of [stigma] is to open up about it and for other people to see that this wacky, fun, smart little bugger has Aspergers Syndrome. Then they go Oh, well thats not so strange then, is it? (Family 4)

Eventually, they began to feel more comfortable and condent in their ability to parent along with a sense of regaining their footing. Some parents were surprised by the help now available to them, particularly after experiencing so many years of managing alone. Others felt overwhelmed and struggled to orient themselves to the services and supports available.

Parents learned about AS and began to separate their children from the AS. They gained expertise on reading their children and distinguishing whether the behaviours they were seeing were AS-related or child-related. One mother explained it this way: We often say to each other, is this an Aspie thing or is it him being a deant 11 year old boy? Parents also learned their childrens capabilities and were better able choose the most effective approach to managing problematic behaviours. Some parents got glimpses into their childrens world.

Mother: Its almost like a second sight into his world. Im with him so much that I start to see things like he doesand what hes thinking without even asking a lot of the times. (Family 2)

The two subthemes of regaining our balance are: balancing expectations, and balancing parental roles and responsibilities.

1. Balancing expectations

Parents began to adjust their expectations of their children when they recognized that some behaviours were a

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reection of the AS, and were not under their childrens control.

Mother: A lot of his idiosyncrasies, once we found out he had Aspergers, immediately we let it go.Thats the way he is, leave it be.Like hed be icking his ngers.Didnt matter. (Family 1)

Mothers often had to remind family members of the need to adjust expectations according to the needs and abilities of the child with AS. They explained their childrens behavioural cues and triggers as a way to avoid escalating problematic behaviours and manage parenting and family life with greater ease.

Father: My wifes reminders to me [helped]that he has Aspergers andthat what might seem like inappropriate behaviour or wrong behaviour is actually expected for him. (Family 4)

As parents confronted the reality of their children having AS, and adjusted their expectations for their children, they grieved the loss of idealized goals and expectations for a normal child.

Mother: Our goals changed from [Child with AS] having friendships to developing one true friend.

That he understands what that means to be a friend. So those expectations change but in that changing theres a part of you that has to let that expectation go, and thats not always an easy place to go as a parent. When youre pregnantyou have hopes and dreams and desires for your kidsthen the realization that not all of those things are gonna be possible is hard. (Family 3)

Parents attempted to inuence others expectations and blame by revealing the AS diagnosis. As one mother noted, when teachers understood her childs AS and how it factored into the teaching and learning experience, they tend to be a little bit more gracious, and they tend to change the way they teach or the way they approach something. However, many parents reported that, even with information about AS, teachers continued to hold unrealistic expectations. One mother explained:

I had one teacher tell me Hes twelve years old, he should be able to do this now, and I said Hence the title special needs. [Child with AS] was supposed to write in his journal every day, and [teacher] was to make some comment in there, and she wasnt writing in [it]. I said Why isnt this being done? and she said He doesnt bring me his journal, and I said Could you not ask him for it? and she said By the time youre twelve I gure they should be able to do this.I went home in tears that day.How many

years Ive been explaining this and then to have somebody say that to me. (Family 2)

Parents also encouraged extended family members to adjust expectations.

Mother: I remember writing my Dad a long emailexplaining this is what it is and then saying to him, You need to read up on this because hes your grandchild. And my Dads a really nice guy but he wasacting like well, he should just be able to shape up, pull up by the bootstraps, straighten your tie and chin out, and pull through kind of thing. Nice that he has this Aspergers thing, whatever that is, but get some medication, lets go. Now I think he really understands a lot more, and I know that he did his own research when I asked him to. (Family 4)

Balancing expectations both within and outside the family continued over time; however, parents held on to the hope their children would one day be able to function independently.

2. Balancing parental roles and responsibilities

Parents emphasized the importance of working together as a team and capitalized on each others strengths and abilities. Mothers typically did the frontline work.

Mother: Ive become the specialist just trying to gure it out on my own, and then talking to [Husband], and working as a team to implement it. [Husband]s the implementer and the guy whose been home and really supportive, and Im the one reading and saying lets try this and lets try this and lets not give up and when he crashes I keep going, so weve got some balance between us. (Family 6)

Fathers most often supported mothers by: (1) assertively advocating for their children in meetings with professionals; (2) discussing decisions regarding services and supports; and (3) noticing when mothers needed a break to care for themselves. Although parents were able to manage the roles and responsibilities of the household, they experienced challenges in the areas of career, social functioning, maintaining fairness across their children, and nances.

AS signicantly challenged some parents career paths. For example, children in modied school programs spent more days at home, which meant a parent needed to be present. Some families decided that one parent should move out of the workforce in order to support the child with AS.

Mother: We try to trade off but [Husband] is home for probably more than three quarters of the time. That has severely impacted his career path and

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theyve made that clear in his job.So were trying to get a better balance but its been a problem.One of us is always home no matter what. If we choose to go outwe will not leave [youngest child] alone with [Child with AS]. (Family 6)

Parents found themselves torn between meeting the needs of their children with AS and meeting the needs of their typically developing children. Although parents worked hard to allocate their time, attention, and money equally to all of their children, they were not always successful.

Mother: Fair for us will never be [that typically developing child] will get equal time. She wont. Thats just a reality. Its a reality that weve had to accept as parents, which is hard because you want that, I want to be able to give her as much time as I give [Child with AS] every day but I cant, I dont have that many hours in my day. (Family 3)

Parents also recognized that their typically developing children made sacrices for their siblings with AS. As one mother said, Is it fair? Absolutely not but its her reality too. One of the supports that few families had access to was respite. Respite is usually reserved for families experiencing severe forms of autism where the child has major physical health needs, below average intelligence, and/or requires daily medical care, meaning children with AS are excluded. One mother explained her familys need for respite in this way:

So much of it comes back to the one core thinga few days of respite, where we couldvehad that one on one that you need with your [typical] children.Just so that they could breathe, sothey know what it feels like to be normal. I think that wouldve been huge. (Family 6)

Overall, regaining our balance was a process in which parents were pointed in the right direction by their childrens diagnosis of AS, and developed strategies for managing the complex and varying tensions of parenting. Expectations were continuously adjusted and parenting roles negotiated. Parents experienced success in parenting and gradually regained their condence, which enabled them to offer advice to others as a way of helping them nd their balance.

Discussion

The literature on parenting a child with AS contains themes ranging from difculty attaining a diagnosis, signicant levels of stress, encounters with stigma, and increased susceptibility to mental health problems. However, few

studies have addressed the complete experience of raising a child with AS, including the challenging and positive aspects from both mothers and fathers perspectives. Rather, the limited literature on parenting a child with AS is largely descriptive rather than explanatory (Chell 2006; Little and Clark 2006; OHalloran et al. 2013), and focuses on specic aspects of the parenting experience, such as the wonders and worries (Little and Clark 2006) or experiences of diagnosis, treatment, and service provision (Chell 2006). The purpose of this study was to describe and explain the experiences of parents raising a child with AS. The core construct of parenting as a balancing act was identied. The two themes of the balancing act are: losing our footing and regaining our balance. The work of balancing life with AS was challenging, and involved learning to read the child in order to develop a repertoire of effective management strategies.

An important nding was the experience of parental blame, which has long been noted in the literature on parenting and autism (DeMyer 1979; Schopler and Mesiboc 1984). Early literature on parental blame largely focused on mothers parenting deciencies as the primary etiologic factor in autism (Gillberg et al. 1987; Gillberg 1988; Rimland 1964). In spite of advances in understanding the etiology and impact of autism, the psychological legacy of blaming mothers for their childrens autism has lingered (Kuhn and Carter 2006). This study highlights the multi-faceted experiences of blame including self-blame identied by fathers, parents blaming each other, and outsiders judging and blaming parents. Blame undermined both mothers and fathers condence in their abilities and knowledge (see also Neely-Barnes et al. 2011), was destructive to parenting, and interfered with coping in the context of unremitting difculties (see also Kuhn and Carter 2006). There is a vital need to educate health and school professionals in order to dispel the unhelpful default explanation that poor parenting is the underlying issue in AS. Parental blame contributed to the stigma felt by parents that often isolated them from extended family and the larger community (Gill and Liamputtong 2011; 2013).

This study revealed the serious difculties associated with parenting a child with AS and the resilience demonstrated by the parents (see also Bayat 2007). Parents showed both remarkable perseverance and resilience in the face of longstanding adversity, striving to nd the answers they needed to help themselves, their children with AS, and their families regain their balance. Stressors included parents difculty making time for the marital relationship and typically developing children, nancial costs of pursuing help, career sacrices, experiences of parental blame, social isolation from extended family, friends, and the community, and the daily demands of often unsuccessfully

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managing the AS. Given that one effective strategy involved a parental team approach, questions remain about the risks for sole parents who may lack the supportive resource of another adult to help them cope with and manage parenting a child with AS.

Along with the challenges, parents described the positive experiences associated with raising a child with AS. They remarked on their own personal growth and development, including increased acceptance and tolerance. This mirrors previous research on the positive impact of raising a child with an intellectual disability (Stainton and Besser 1998), including AS (Little and Clark 2006). The ability to nd both the joys and the sorrows in the parenting experience can be a constructive, meaning-making process integral to the parental work of adapting to and coping with raising a child with AS (Little and Clark 2006; Pakenham et al. 2004). The ndings of this study challenge the perspective that parents who notice the positive aspects of their experience are overly optimistic, denying the true nature of the condition (Scorgie and Sobsey 2000). Rather, successfully parenting a child with a developmental disability is often paradoxical in nature (Larson 1998) characterized by parents ability to acknowledge both the positive qualities of their children and the challenges of managing the condition (Kearney and Grifn 2001).

Although the parents in this study were well educated and demonstrated strong advocacy skills for themselves and their children, all but one family struggled over a prolonged period to obtain the diagnosis of AS. Parents rst noticed their childrens differences in the preschool years and did not receive a conrmed diagnosis of AS until their children were, on average, 10.75 years old (SD 2.87). This is consistent with previous research revealing parents of children with AS wait on average 5.5 years for a diagnosis that is received when the children are 11 years old (Howlin and Asgharian 1999). Although the autism literature does not specify what constitutes a delayed diagnosis, there are consistent reports of a signicant lapse in time between the age of rst parental concern and the age of rst autism spectrum diagnosis (Wiggins et al. 2006), with parents of children with AS waiting considerably longer than parents of children with classic autism (Howlin and Asgharian). The participating parents had signicant resources available to them and still struggled with systems that were unhelpful and, at times, obstructive.

Parents were largely dissatised with initial responses from health care and school professionals. From a practice perspective, this serves as a reminder of the importance of listening to parents concerns, afrming their struggles as real, acknowledging them as experts on their own children, and engaging in comprehensive assessment before drawing conclusions about the child or the parents. As Gombosi (1998) aptly stated, I dont think we can speak about what

parents need from professionals until we recognize that parents are the most important resource a child has (p. 251). Acknowledging and accessing this expertise is a key strategy for not only establishing and strengthening the therapeutic alliance but for accessing important information to facilitate accurate diagnosis and guide appropriate treatment.

School and health professionals require education to help them recognize the often subtle presenting signs and symptoms of AS that can be masked by exceptional verbal and intellectual abilities. However, this recommendation is only feasible if a valid and reliable description of AS symptomology exists. Delayed diagnosis continues to be a serious problem and must be addressed, especially considering the numerous benets of early diagnosis for children on the autism spectrum. Benets include earlier access to funding and treatment, improved outcomes, reduced lifetime costs, and minimized distress for children and their parents (Autism Speaks 2013; Barbaro and Dissanayake 2009; Fenske et al. 1985; Harris and Handleman 2000). The lifetime costs of assisting a person with autism can be cut by 50 % if an early diagnosis is provided along with effective treatments and adequate family supports (Autism Society Canada 2004).

Although the current study provides a rich description of the experiences of parents raising a child with AS, its transferability to other parents of children with AS is limited. Recruitment of eligible families was achieved largely through newspaper articles and advertisements, thus privileging a particular subset of the population who had the time, energy, and resources to access a newspaper, respond to a research advertisement, and participate in a research study. Additionally, while this study included female children with AS, the sample was small and thus gender analysis was not supported. Furthermore, more interviews were conducted with mothers than fathers, which may have also biased the ndings toward a more gendered view of parenting children with AS. Most importantly, these parents represented a unique sub-set of the population of parents raising children with AS (i.e., dual-parent Caucasian families with relatively high socio-economic status and education living in Canada); as a result, the ndings are not easily transferable to other parents of children with AS.

Further research into the experiences of parents raising a child with AS can address the limitations listed above by developing larger studies of more heterogeneous samples, including parents of diverse family backgrounds (e.g., education, economic, cultural, ethnic) and family types (e.g., single-parent, same-sex, skip generation families) to gain a more complete understanding of parents experiences of raising a child with AS. AS is more frequently observed and diagnosed in male children. Consequently, the majority of studies on AS have recruited parents of male children with AS and parents of female children with AS have long been

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under-represented. Future studies should further investigate the inuence of gender on raising a child with AS.

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